Patient Stories Hub

Patient Stories

Patients often become experts on their own medical condition – find out how these community members manage their healthcare, and learn from the experts. Everyone with a bladder or bowel control problem will have a different story to tell and we are proud to be able to share so many of these with you.

These bladder and bowel patient stories can offer hope, inspiration and practical guidance to others in a similar situation.  Being able to identify with someone and make a connection can be the first step towards an eventual recovery – each story could help change someone’s life.

Please contact us to find out how you can share your story and how this could help raise awareness.

By working together we can help people understand more about these problems, the challenges faced and how and where to access health professional support.

Read some of our recent stories below.

Bowelbabe Saved my Life

Mags tells us how a chance listening to Deborah James' (aka Bowelbabe) podcast ‘You, Me and the Big C’ made her realise her symptoms were bowel cancer. Here Margaret tells us about her diagnosis of Stage 2 Bowel Cancer in January 2019 and…

Lucinda’s Story – BAD/BAM

Lucinda Barton suffered with what she was told was Irritable Bowel Syndrome for over 20 years, despite constant trips to her GP and several gastrointestinal specialists for tests and  following various diets over the years, her symptoms…

Endometriosis is more than just a Bad Period

What is endometriosis, and what are the symptoms caused? We share three community stories from women who have experienced the condition first hand, and learn why it can take up to 8 years to be diagnosed.

Dysautonomia and my Catheter

During February we organised a catheter awareness week on our social media channels to raise conversation around conditions such as Fowler’s Syndrome, Sacral Agenesis, Urinary Retention, Bowel Cancer and Dysautonomia, all of which can lead…

Abbie’s Intermittent Catheter Story

Abbie Stapleton, 25 from St Neots tells Bladder and Bowel Community how endometriosis and Fowler's Syndrome led to extreme bladder pain and bladder retention, resulting in her intermittent catheters.

Urinary Retention and Fowler’s Syndrome

Zoe, 24 from Oxfordshire/Northamptonshire border tells Bladder and Bowel Community how one day she just went into urinary retention and how having a diagnosis of Fowler's Syndrome changed her life.

Natalie’s Bowel Cancer Story

Natalie, 39 from London was diagnosed with Stage 4 bowel cancer at the age of 36. The cancer had grown extensively and even after intense chemotherapy and radiotherapy treatments, she ended up undergoing Pelvic Exenteration surgery, which…

Spotlight on Fowler’s Syndrome

Today’s spotlight is on Fowler’s Syndrome, a little known bladder disorder that affects women and causes urinary retention and extremely painful bladder symptoms. Here, Megan Entwistle, 25 from Rotherham, South Yorkshire tells her story…

Being Diagnosed with Coeliac Disease Changed my Life

Coeliac Disease is a little known condition where the body’s immune system attacks the tissues when gluten is consumed. For Stella, diagnosis was positively life-changing - it meant she no longer had to live each day with stomach problems.

The Crippling Pain of Endometriosis

Dionne, 23 from Scotland talks to Bladder and Bowel Community about how the perception of endometriosis needs to change and more awareness is needed around just how damaging this gynaecological condition can be.